Vaughn Scott

Vaughn was 32 and working overseas for the Armed Forces when he began to experience chest pain. Soon, he was being medevacked back to the UK to be diagnosed with acute lymphoblastic leukaemia. Now in remission, Vaughn is sharing his Spot Leukaemia story to raise awareness of leukaemia symptoms, especially amongst the BAME community.

 

I was on Ship overseas and it started with a dull pain on the right side of the chest in March 2018 after a gym workout. I assumed it was a pulled muscle so continued my normal routine. I mentioned this to my ship Medic who happened to be a good mate, but nothing further at this stage.

A week later the pain continued, and it wasn’t until after a night out in Djibouti when I woke in the early hours of the next morning with excruciating chest pains, even more so with every breath. I got up to go to the bathroom and I was struggling for breath and felt completely exhausted like never before. That morning I visited the hospital on-board which was three decks up and I was struggling that much I had to pull myself up at every step. The doctor carried out an electrocardiogram (ECG) and immediately suspected pericarditis. He said I had to get off the ship to the nearby military hospital, so within 15 minutes I was in an ambulance. Tears were streaming at this point with the pain and the realisation of missing the trip of a lifetime, not knowing if I would ever get the chance again to visit these areas.

At the hospital, they carried out blood tests, CT scans, chest x-rays and pericarditis (fluid around the heart) was confirmed. After a couple of days another CT scan was done which showed the pericarditis was now forming around the lungs, and it was at this point they said I needed to get back to the UK ASAP. I was eventually medevacked with a doctor and nurse after five days but having to use oxygen throughout travels. This was due to my oxygen levels dropping rapidly below 80%. I remember having to be wheel-chaired whilst on oxygen seeing others looking and wondering.
I went to Birmingham QEH, and at first the doctors were thinking I had caught a virus or disease from being overseas, because of the pericarditis, which they suggested would be a symptom of an infection or virus and my body’s reaction to fighting this. This meant I was on an infectious disease ward.

There were lots of blood tests done and I was getting increasingly worried. During this time nothing was divulged to me and I was left very concerned and in the dark. My wife, however, had suspicions that it was a type of blood cancer based on the frequency of the blood tests. She researched and discovered that, to enable an accurate diagnosis, samples had to be taken over a period of time and changes to the cells would indicate the type of cancer. When the doctor eventually told me I had acute lymphoblastic leukaemia (ALL), my wife had already said she suspected this, so I wasn’t actually surprised.

After my diagnosis, I was made aware of other symptoms that would have been a sign in the lead up to this, fatigue being the main one. I was fatigued over a period of time but put this down to bad sleeping habits. My fitness was declining, and simple exercise would be a struggle. I also seemed to have had lingering colds. None of this was blindingly obvious and I always put it down to other things, like working and having young children.

I always thought I would never have to experience any life-changing issues with my health, so I have struggled to come to terms with this. I was always healthy, fit, free. When the doctor told me I had ALL, my wife had just left the hospital to go home to our children, so I was alone. The doctor said he
was sorry and explained what it was, that it was treatable and should commence soon as possible following a bone marrow biopsy. I had to tell my wife over the phone. She came back the following day and that’s when it all started to take place.

I was moved to the Oncology ward following the bone marrow biopsy and I began a course of steroids to enable my body to withstand the chemo. I had a four-week course of intense chemo as an inpatient and I couldn’t see my children during this time. I had already been away from them for over a month, so this was very difficult. During my first chemo session, I was anxious, nervous and didn’t know what to expect. The nurse couldn’t catch a vein, so it took ages to get the treatment going (a large syringe of bright red poison!). She had to sit with me for about 20 minutes while very slowly administering it. On completion, my arm went hot on the inside but on the outside it was ice cold. I tried to pretend it wasn’t, but my wife felt it and called the nurse, and before you knew it I had the nursing team, doctors, and every other man and his dog standing round my bed—great start! After this it was decided to have a Peripherally Inserted Central Catheter Line (PICC line) fitted; I definitely welcomed the fact there would be no more needles required. One particular treatment I didn’t enjoy was the intrathecal, which is the chemo into the spinal fluid to stop the cancer spreading into the brain, as if it spreads to the brain, it hides away undetected.

I met some great chaps on the ward at QEH and we are still in touch now. We would sit up late and chat, watch footy and support each other in any way. Neither of them had ALL but we were all in the same boat and it felt good to have some company.

After my month as an inpatient, I was allowed to transfer back to Bristol for the remainder of my treatment. Before leaving Birmingham, I had a consultation with the doctor who said my type of ALL would be curable with just chemo, that I wouldn’t need a bone marrow transplant, and he said this was a good thing, seeing as I was responding to the treatment very well, as finding a match for me because of my ethnicity could be very difficult. It soon became a very different story.

I had a week off from chemo before I had my first appointment at Bristol. I saw my children and chilled at home. The first time I arrived at BHOC, there had been a fire in the unit during the evening before and all was a bit chaotic. We were told to go down to the Heart unit, where we waited for a while before being taken to the A&E department where I had another bone marrow biopsy. My new doctor introduced herself and explained the course of treatment I would be having. I started chemo in the physio gym as the unit was closed following the fire. The staff were amazing and again I met some great people, as I had to go to the unit every day for chemo during a four-week schedule.

Once we were back in the main BHOC Unit, I first met my professor, the main man in charge of bone marrow transplant patients. My first meeting with him was difficult; I was having some treatment and he marched over to me, introduced himself and said I needed a bone marrow transplant, and I needed it now. No match had been found and time was of the essence. My parents and siblings all live overseas in the Caribbean and Canada, so testing them as a match for me was impossible. I always knew I would be fine and never had a doubt but it was always hard for me to understand how it would be or was so difficult to find a donor—20% chance for someone of BAME background vs 70% for a white patient. This is when our journey into raising awareness began. Whilst still having treatment, my wife and I went into action with registering people from the BAME communities on the bone marrow register, not so we could find a match for me—we knew we didn’t have time for that—but to help save as many other people like me as we could. We ran events, went to St Pauls Carnival in Bristol, and involved my work colleagues and my fellow Vincentians living in the UK to successfully register over 300 people during the period. We even had recent communications from one saying they had been found as a match for someone and were off to donate the next day.

Our two very good friends decided to help us raise awareness and ran the London Marathon in aid of Leukaemia Care—we threw many events, including a huge charity ball, raising £12,000. All of this made me feel incredibly proud and provided me with so much hope and support, enabling me to see the positive in even the worst situation.
But still I had no living donor. My parents were flown over and bloods taken, but they would only ever be a half match, 50% Mum, 50% Dad. It wasn’t enough. Then the news came that the nurses had found two umbilical cords in America—one was 6/10 and the other 8/10 match, so the countdown to transplant began. The chemo had gotten very intense; I had lost my hair, I had lost weight, I felt sick. I had some very intense treatment where I had to remain an inpatient until the chemo had fully left my body, all the while hooked up to a machine pumping me with liquid day and night. I was tired.

Finally, the doctor told me my ALL cells were low enough for me to begin conditioning for transplant. A course of chemotherapy and radiotherapy was very precisely administered in the seven days leading up to transplant. I think signing the radiotherapy consent form is something I will never forget. All the side effects, short and long term, the risks and the possibility of it killing me was out of this world, but I had no choice. Professor had told me I had 10% survival rate of making five years without transplant, whereas it was 50% with a transplant. I have a family. I have a life to live.
The transplant was pushed back a bit as the 8/10 umbilical cord they had for me had been damaged during storage, so they had to use another which was a lower match but still good. I was nervous at this point as the 8/10 match was really a miracle; I felt blessed to have such a strong match. They had to fly the cords over from USA, check they were the correct ones and prepare them for the transplant.

The radiotherapy wasn’t anywhere near as bad as I thought it would be during treatment itself—lie on a massive bed with funny bandages round your head and feet, leaded pillows, and chilled vibes music playing. On my last session I rang the bell. This was supposed be the last session of any treatment I had once the transplant happened.

I had heard so many stories about having a transplant, so I was excited to start the newest journey of my life, to get better, to be rid of ALL. It was a hard road ahead, but I had every faith.

I had the transplant on September 14th 2018, just six months after diagnosis. I was given strong antihistamines so was very drowsy during the process and slept for a while after. The cords came in tiny plastic bags in a huge frozen canister. The nurses did lots of checks and then simply inserted it through my PICC line, simple as that, no fireworks, no special feeling, just easy peasy.

In the following weeks, I had several bad side effects from both the radiotherapy and the transplant itself. I had severe mucositis, stopping me being able to eat, so I was tube fed through my nose for several days. I was incredibly tired and had no energy or strength to do anything. I was told that it would take 100 days before I would be able to know if it had worked, and during this time I had to be extremely careful of catching anything as I would have no immunity to anything as my immune system had been wiped out by radiotherapy and chemo. However, when you have a cord transplant it differs from a live transplant, as there is no immune system for the body to adopt, so not only was I neutropenic, I had the immune system of a new-born baby. I was discharged after 17 days following transplant as they had said my blood counts were looking good and I had engrafted, meaning the transplant had seemingly worked, triggering my bone marrow to start producing new blood cells.

I was sent to a flat in Bristol so I was close to the hospital and away from my children, who could potentially pass bugs to me. My parents were still in the UK, so I had people with me to support me as my wife had to split her time between being with me, working and looking after the children.

I realised passing urine was getting uncomfortable and eventually painful. A sample was given, and a urine infection was confirmed. The doctor at the time told me off for not saying earlier that I was dehydrated. This was a result of me refusing to drink, fearing going to the loo. I was readmitted in October after having a temperature spike out of nowhere. During one evening, my top temperature rocketed to 42 degrees. I think my wife will tell you she thought that was the end. The nurses were flapping and trying to cool me down. Panic had set in. I was vomiting and had diarrhoea and my weight had dropped to 54kg. I had lost 30kg in total and most of this was in the last month. I was told I had Graft-versus-Host-Disease (GvHD) of the gut and I had to completely stop eating for three weeks. I was fed via my PICC line for three weeks and only allowed to eat very plain bland food after this to rehabilitate. I could only drink 500ml of water a day. I think this was the toughest point of the entire journey. I felt ill. I felt weak.

I was on lots of steroids at this point to counteract the GvHD and I believe they had some crazy effects on my moods. Once I managed to hold food down, they slowly increased the amount I could eat but I had to follow a bland diet for a long time after leaving hospital. I had to go back to the flat and continue to stay away from the family home for my own safety. Once my parents had left and 100 days had passed, I was finally allowed home to recover with my wife and children. It was difficult—I couldn’t play with my children as I had no energy, I would need to sleep in the day and found the smallest tasks would wipe me out.

After Christmas, things started to get back to a new normal, and after five months post-SCT work started discussions about returning. It was too soon at that point, but I started discussing plans with them and setting up goals for me to reach with regards to working again.

I have had to go back to hospital frequently due to my weakened immune system. I have had pneumonia twice, had to have treatment for Respiratory Syncytial Virus (RSV). Pentamidine was a breathing steroid treatment I needed to support the lungs since all the chemo and total body irradiation was that intense. I have been on antibiotics more times than you could imagine; I still get sick now and again and my stomach isn’t what it used to be. During my time in and out of the BHOC unit, I have seen people come and go. Some got better, some didn’t, so I give God thanks for every day I have to be with the people I love. I know how close I was to not being a survivor.

In July 2019 I married my now wife surrounded by our family and friends. We had booked the wedding at the start of my treatment as my wife said I needed a target to get to, something to focus on. I’m sure she will admit she didn’t think we would get there, but we did.

I had a bone marrow biopsy after 90 days following transplant and it showed my marrow was 100% donor—the transplant had worked. Another biopsy at one-year showed the same. I had made a year. I am approaching my second year. All my blood works are looking very good so far. I suffer with fatigue and general fitness most times, and I have just received a diagnosis of chronic skin GvHD, but only a small percentage of the body, so the doctors don’t seem too concerned. In the grand scheme of things, it’s a small price to pay for life.

I have meetings now every three months with the professor—this was twice a week to start with, then once a week, then once every two weeks, a month, every other month and now three months. He tells me I don’t need him anymore, but I’m not so keen to let go! There is something reassuring about having contact with them, albeit I’m glad I don’t need them, they helped saved my life.

However, whilst it is always nice to hear that you look well, the reality is there are underlying issues that people don’t know about. I face challenges with daily tasks, and immediately after transplant I could barely walk for more than a few minutes. An example of the difficulty of looking well when you are not is the judgmental looks and frowns I have received when I legally park in disabled bays with my disabled badge. I overhead a lady saying, “Well, he looks very disabled, doesn’t he?” What they fail to realise is total body irradiation has weakened my internal organs, especially my lungs. I’ve lost a lot of muscle and have chronic pain in both knees. It may be said ‘not every disability is obvious’, but it certainly feels that if it isn’t obvious it allows people to assume it isn’t relevant. I still to this day have to explain myself in certain circumstances as it is difficult for people to understand that my body is still repairing.

I had been back at work since July 2019 before we went into lockdown for COVID-19 and I am now shielding at home with my family. I am fortunate to be a member of the Armed Forces and so my job has remained secure throughout. As a family we had fantastic support in the beginning; however, once I had been off work for a year, it felt like there was pressure for me to get back to work and ‘normality’. I have been open about my mental health and this is something I am looking into solving, but it’s not been an easy thing to find help with. Looking back at all that I have been through, this has left a scar for life, but with all that I have had to fight, I am more than thankful to be here to tell my story.

The most difficult aspect of this journey to this day is the mental effect. I have always been very strong-minded, but this experience has been enough to affect me mentally. At the time I felt like I had lost total control of everything, not being able to see my family, friends, have fun. Nothing was normal anymore; the hospital became my new home, but I never liked being admitted as it took away what little freedom I had. The food was terrible, nurses in every four hours—I hope I won’t have to experience anything like this again.

Blood cancer as a whole is not something people are aware of; I knew nothing about it prior to my diagnosis. When I tell people I have had leukaemia, they think that it’s a child’s cancer. All cancers are horrendous, but with blood cancer the danger is the lack of symptoms and how quickly it can progress and consume the body. I have met so many people, all with different stories and different treatment plans—blood cancer isn’t one type fits all, it’s complex, dangerous and clever. It is so important people know the signs and that GPs and the like take these symptoms seriously and get people checked.

Also, for me personally, raising awareness within the black community has been one of the most relevant and important things I can take from all of this. So many of my black friends and family had no idea things were so much more difficult for people of our ethnicity and the fact that we have been able to potentially help so many more people like me is just amazing.
I strongly believe that leukaemia and any other blood cancer should have as much awareness and support as a more widely recognised cancer such as breast, brain and the like, but it sadly feels like this isn’t the case at the moment.

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